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Newly diagnosed with AML (FTL3 TKD)
Hi I’m Jamie, 39 and I was diagnosed on 5/26/24 with AML mutation FTL3 TKD.
I live in Dubai and can’t really find a lot of information or stories of others with a similar diagnosis to mine. We are still waiting for the BMB to come back as it is sent to the Mayo Clinic with a turnaround of 2 weeks. The general plan is to complete 7/4 and so far I have completed 1 cycle and will start Midostaurin tablets for 14 days soon. If anyone has the same diagnosis, can you please share anything helpful as I’m feeling very scared at the moment.
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@jamielynn777 How are you doing? Getting ready for the SCT on the 9th?
Ginger
Jamie; I was dx with AML with FLT3 and other mutation. I have gone through all chemo drugs on anew drug called xospata it's all right but platelets are low so I need transfusion every 2 days ugh! But keep fighting I'm ready for my transplant can't wait. So hang in there it does get better. Prayers all around.
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1 ReactionWhat if your age stops you from getting a bone marrow transplant....what are our options....would like to find out if anyone over 75 got the bmt and how did they do
I was 75 when diagnosed with AML-TDK.
FLT3 mutation and NPM1. They found 5 matches and presented me with BMT as a treatment option. Due to the 100 day quarantine and possible complications after BMT I elected to forego the BMT and have chemo (Dacogen and Ventclextca) treatment monthly (weekly blood draws). I am 17 months out and am in deep remission.
My latest MRD (measurable residual disease) blood test could not find any mutations. My numbers continue to be below normal thus we continue with my treatment every 5-6 weeks. I hope you find a solution that works for you!
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3 ReactionsBMT was done on 9.9.25 🎉
I’m day +7 still recovering lots of lower back pain but hanging in there as much as I can 💕
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3 ReactionsHi @jamielynn777, it’s so good to see a note from you this morning! Congratulations on your new Re-Birthday! 💞
The next couple of weeks are generally the, shall I say, least pleasant? Once those newly infused stem cells engraft into your marrow in an another week or so, you should feeling progressively better and stronger. I hope your back pain eases soon. Do you know what’s causing it?
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1 ReactionHey @loribmt nice to hear from you! yes it’s from the Neupogen shot to increase the WBC count. I’ve had the shots before with 0 neutrophils and there is some lower back pain but I guess having undergone the bmt it’s just way more painful. I just had my 2nd shot today so fingers crossed it settles down.
Honestly feeling so grateful to have this opportunity that it makes it all worth it!
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1 ReactionJamie, that back pain from the Neupogen was the worst pain I endured through that entire AML/BMT journey. I know you’re not in the US but do you know if your doctor can prescribe you an antihistamine called Claritin? The generic name loratadine.
When taken once daily for about a week or so after the Neupogen shots it diminishes the pain! But either way, that pain should subside in a few days.
I’m so glad you’re doing well and that you were able to finally get this transplant! Keep me posted, ok? Sending you an air hug! 🥰
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3 ReactionsJust came across this post, which makes me feel a bit more optimistic before I see my oncologist tomorrow. Completed fourth cycle of consolidation chemo a few weeks ago, and numbers are almost back to normal. Feeling absolutely great. BMB showed no signs of AML from morphological inspection, but MRD was .28%--not too far off from your value. I'm favorable risk and hopeful no BMT needed for now. Will ask for BMB every three months.